So I know that I posted an upbeat and fun little video last week about my taxol infusion experience, but one thing I didn’t let on is that I was dealing with a much bigger and scarier issue I wasn’t ready to share yet. I am sharing now because it’s been hard to keep this information from my support network and cancerland has changed rapidly for me in the last week. 

About 4 weeks ago I entered into a brain MRI study that was asking the question as to whether or not adding brain MRIs to the standard of care imaging screenings made sense. As of right now, there are no brain scans done preemptively upon diagnosis unless there are symptoms that would be of concern (i.e., headaches, vision changes, unexplained vomiting, changes in any of your senses or balance, etc.). Adding these brain MRIs to an initial diagnosis or to time of progression instead of when a patient becomes symptomatic may lead to finding brain metastases early and may allow for early monitoring or faster action when/if something comes up. 

In my case, I went for the screening MRI for this study thinking I would just be entered into the study and nothing would come of it, at least not right now. Three days later I got a call from the doctor running the study, Dr. Aizer, and he informed me that there were three tiny spots in the posterior fossa on my brain. He wanted to scan again, but we needed a few weeks between scans to see if these lesions were stable or changing. 

The waiting game is ALWAYS the hardest. I told only a few people, but I hate to put that same information on anyone else to carry. To know information but not be able to do anything about it, is excruciating. 

In the meantime, I was experiencing nausea, dizzy spells, one day I could barely walk without getting sick, fatigue, some visual changes, etc. I kept thinking it was all due to taxol or dehydration. Hoping and wishing none of my side effects were due to something happening in my brain. 

So we get to Wednesday this week and I go in for the second brain MRI and found out that the cancer has in fact grown and is now in my cerebral spinal fluid, which is a condition called leptomeningeal disease. This is rare and very serious. If left untreated for even a few weeks more and it can be deadly.

The radiation oncologist, Dr. Aizer, is now a part of my team and he’s great. He calmly and thoroughly explained the seriousness of the situation, and how we needed to act quickly in terms of treatment. 

Treatment for brain metastases that are not in control usually includes radiation followed by chemo which for sure shows that it can cross the blood-brain barrier. This is my current plan. Five whole-brain radiation treatments, then moving on to a chemo called Doxil next week. 

I am leaving out some details that are sort of unnecessary here about what else I had to do this week, but I have been down in Boston on Wednesday, Thursday, Friday, and today (Saturday). It’s been A LOT this week. I couldn’t do it without the rides and help with childcare that has been given so generously. Thank you! I had mapping/planning for radiation yesterday along with my first radiation treatment. Today I had my second radiation treatment. The rest will continue Monday through Wednesday. 

I’ll try to have more to come about what’s next when I know more information, but for now, I leave you with this scary and uncertain news. Thank you all for the support and flexibility this week as I have had anything but a predictable and easy week. 

Hello friends! I had scans a couple of weeks ago now and have some good news to share! First set of good scans in a very long time. The liver lesions have mostly shrunk or those that didn’t shrink have remained stable. Additionally, the liver enyzmes I have been worried about are heading down too! Two out of the three main enzymes that I watch are now in the normal range. And one is still fairly high, but it heads down a few points every week. Yay!

Side effects remain pretty manageable, although they are starting to accumulate. I have neuropathy in my feet, I am feeling nauseous a little more frequently, and my fatigue is kicking up a notch. My hair has continued to thin, but that has slowed a little the last couple of weeks. Even with all of that, I am still living a full life!

Two weeks ago I recorded a video of my day at DF just so you could get a little look at what an infusion day is like there. This infusion day was shorter than days where I get to see my doctor or nurse practitioner. I only see a provider on the first day of each cycle. And those days are extra LONG. This was recorded on week 2 (of 3) in my third cycle. Let me know if you have any questions about what you see (or didn’t see).